Caregiving

My mom, God love her! Ninety-five years old.

Her world consists of a 10 x 15 room, window looking out on a brick apartment building, a bathroom, and the fourth floor unit of a long term care facility in Cleveland, six hours away from me. Bingo on Monday afternoons, arts and crafts on Wednesday morning, 15 minutes evenings on the NuStep exercise machine in the hallway. Meals taken in a dining room where the tables have no chairs. Wheelchair bound, she requires two aides and a stand-lift machine to help her from bed to bathroom to wheelchair and back.

This is a woman who used to drive into the seediest parts of Washington DC to minister to the homeless. A woman who leafleted for gun-control legislation in the halls of Congress, who referred to the president as Bill, who outfitted a home for families of recovering drug addicts, not to mention raising a family of five Army brats, with all the cooking and moving that entailed, and leading the Protestant Women of the Chapel and the Girl Scouts and who knows what all.

Three years ago she had a stroke. From having to be dead-lifted to the commode, she was back to driving within six months. We called her our Miracle Girl. No miracles when she had a second stroke a year and a half ago. A “scattershot” stroke, it left her speech unintelligible for months and did untold other damage. Her legs never fully came back this time, and for months she could not swallow properly and was fed via a tube through her nose. She has lots to say if you ask her a question, but often the wrong words come out.

Today was our quarterly 15-minute Caregivers Conference, attended by the head nurse, dietician, social worker, and a member of the family, intended to review the patient’s status in compliance with state requirements. Running late, they called me on my cell phone en route to a lunch date in my Honda Civic, which I pulled to the side of the road. Flu shot, check. TB test, check. UTI test, negative. Pills for pain PRN, Plavix to ward off stroke, Celexa to ward off depression. Wears a brace 24/7 to keep her right leg straight even as it tries to cramp up into a bent position. Weight is 156 pounds, appetite good (thank God, she enjoys her food!), still on thickened liquids only. Strapped into the wheelchair with an alarm belt for her own protection in case she attempts to move herself to her recliner…She’s convinced that if she tries, she can make it.

Her caregivers revel in her ready sweet smile, and my sister and I laugh over her occasional humorous outbursts—the disinhibiting effect of the stroke, no doubt. Like when I took her to church in the shuttle van on my last visit, a hearing aid battery apparently dead, and she said of the minister’s sermon, in rather loud tones, “What IS he talking about?”

My mom. So healthy for so many years, swimming, fearlessly driving and doing, Tai Chi leader, bridge game veteran, completer of Washington Post crossword puzzles in ink…now brought so low, but still smiling!